One night back in February, down at the local bowling alley, Shawn Decker was trying to nail his strikes and spares. Usually he plays well and gets a lot out of it. A 200-plus bowling score means more to him than a 200-plus T-cell count. “When the scores are high, I feel good,” he says. But that evening, even they were slumping. That whole winter, in fact, he’d been bored and frustrated, spending more time holed up in his room, curled over a keyboard, than out and about with friends. “I had become something I didn’t like, and I didn’t even know the cause,” he says.

That’s how my first interview about living with HIV kicked off. In the Summer of 1996 I’d embarked on my first solo roadtrip out-of-a-neighboring-state from Virginia to New York City. I spent close to two weeks there, hanging out with Degen Pener, the talented young writer who’d drawn the laborious assignment of making a smalltown kid with a website seem interesting to the POZ Magazine readership.

In the six months between when I was actually getting bummed out about low bowling scores to telling Degen about my sports biomedical philosophy- an uncredited major from Waynesboro High School- my life had changed dramatically. I opened up about my HIV status and launched a website called My Pet Virus. I was breathlessly shameless about promoting it, and I wanted the world to know my HIV status, a closely held secret that I’d never openly discussed with even my closest friends. Certainly not before I started working on the website.

I discovered my love for writing by putting that website together. And I remember being quite shocked that I couldn’t find more than a literal handful of HIV-authored sites online in early 1996. So I decided to make what I was looking for, in the hopes of being there for the next person logging onto the new cyber frontier in search of community. Quite quickly, I got very good at sharing my feelings through writing, whether it was meeting new friends in chat rooms or typing out my feelings as a twenty-year old who’d lived half his life with HIV. 

So the prospect of being interviewed for POZ Magazine was daunting. And I didn’t have my keyboard to hide behind. I’d be at the mercy of a stranger.

Well, fortunately, Degen was very friendly. We actually became friends. Which made it easy for me to relax and share my story, answering many questions for the first time. I have a feeling that my mom was a much better interview. She was very proud of me for stepping into the light and not shying away from my status, and she also had a lot of her own bottled up feelings. I know she reveled in the opportunity to share, in a national publication, a lot of the attrocities of the smalltown stigma she’d faced as the parent of a kid with HIV.

Degen refused to let me read the article before it was published, and it was an agonizing five month wait. I had a feeling things went well when Sean Strub, who’d invited me to NYC after I mailed a letter of gratitude to the magazine, informed me that my face was going to be on the cover. I pitched myself as a columnist just before the magazine came out, and the editors decided to give me a shot.

Photo by Christopher Makos (Summer 1996)

I knew my life would never be the same after I opened up about HIV. On a personal level. It was a relief to never again have to worry about who knew, and who didn’t. Or when would be the right time to disclose my status to someone if I ever had deeper feelings start to emerge. Just as HIV had changed the course of my life in 1987 when I tested positive, opening up about it after so many years of trying to ignore it had just as much of an impact. Whatever control that I felt I’d lost as a result of the uncertainties that HIV presented, the decision to take control of my own narrative put me back in the driver’s seat...

And speaking of driving, I’d log quite a few miles visiting some of the online friends with HIV I’d made through my website, as well as at the support group I started attending over the mountain in Charlottesville, a thirty minute drive from where me and my parents lived.

Best of all? I didn’t carry the weight of my immune system’s strength into the bowling alley. Bowling in league with my dad and his friends after I put up my website was nothing but pure joy. Even after my car was broken into on the streets of NYC, in the West Village where the POZ offices were located. See, I had a hard plastic case that could carry two bowling balls. It had nice chunky, most-terrain wheels. To the thieving eye, that thing could have been the next nuclear Manhattan project, being delivered all the way from Virginia in an unassuming dark blue Outback.

When Mom got really sick earlier this year before passing at the end of June, I started meeting my dad and brother at the bowling alley about forty-five minutes from where I live. My brother was in league, my dad had long-since retired from the sport he loved. The bowling alley was a safe and fmailiar place to bond over what was happening. My brother and I bowled in a league together around 2002, we got classic “Triple Decker” jerseys made up and everything. I told him to keep a spot on his Summer 2023 team open, and that I was beginning to train for my dramatic return to league. I even bought a vintage bowling bag and cool-as-hell looking bowling ball... my first new ball purchase in close to two decades.

When one of Kip’s teammates for his fall league asked if I’d be a substitute for their team, I jumped at the opportunity. And the last two Mondays I’ve bowled with my brother, with my dad offering me sage pointers on the finer aspects of the game. Pointers I foolishly ignored in my youth, when I was using bowling scores as a report card on the status of my health.

When I posted my first official bowling average, the number was a bit higher than my realistic target. But there wasn’t much time to gloat, because week two the scores dipped, which brought my average down. A few days later I realized I’d forgotten about my “Piston Leg”, kicking out the non-sliding foot with a little gusto helps keep your ball from straying from it’s target. 

At 47, I feel more in control of my body than I did at 18. Looking back, and knowing how low my t-cells were (around 150) and how much fatigue I was dealing with, it’s a triumph of the spirit that my average was around 170 then. Maybe there really is no substitute for youth, because even with my dedication to remedial yoga, an undetectable viral load and my highest t-cell count ever (above 750 consistently), my new average is 151. The wisdom of age finds comfort in that, because there’s room for growth and there is no longer a painful association attached to a substandard ability to pick up a spare.

What’s interesting about re-joining a bowling league is the times we are living in now, in a post-COVID world. And I don’t mean post as in over COVID. I mean it the same way that many things changed forever in a post-AIDS world. I know that, right now, I’m playing it a little fast and loose. I’ve had COVID twice already, the most recent episode was the end of June. 

I tested positive two days before my mom passed. I didn’t tell my dad or anyone in the family because I didn’t want to worry my mom. I knew I’d be okay. I’d had it a year before. Plus, I figured my mom had already had a life’s worth of medical drama with me. I wasn’t about to take her attention off of anything beyond her own struggle to get through her final days. She knew she had her sons’ support and love, and she also knew that I was as healthy as I’d ever been. 

She fought so fucking hard when I was a kid to get me through those early years. I wasn’t about to put any doubt in her mind about the status of my health as she was about to transition to her next great adventure, free of these bodies that tend to fail us even more as time goes by...

My COVID-honeymoon phase isn’t based in strict science. It’s just a hunch that maybe I have enough antibodies to get through another month before I mask up again. I’ll certainly be getting the next booster. My strategy is stay ontop of those, to lockdown when I need to and mask up regularly in grocery stores... heck, maybe even the bowling alley when the time comes. I’ve noticed a few bowlers with their masks under their chins- they take it down when they step up to the line for their shot, then put it back up when they return to their team and the crowd of people.

Maybe it’s not a sure-fire way to prevent transmission, but at this point depending on where you work, how your immune system is, who you engage with on a regular basic, what you believe and what you don’t, etc, we are all making our own decisions about how to proceed.

So, as I embark on my next Tom Brady-esque chapter in bowling with HIV in check, it’s not completely free of a viral threat that lurks in the shadows. And after two dances with the hip new virus, I know I feel a bit more emboldened than maybe I should... but I can’t live my life thinking that if I get COVID a third time that it will be a worst-case scenario. I’m enjoying decent health and finally feel like I have some solid ground under my feet where depression and mental health are concerned. With Mom gone, I need family time...

I’m not gone, Son.

I know, Mom.

By the way, if you’re new here my mom occassionally chimes in from beyond the grave. I type out the “messages I receive” in quotation marks. Is it just her subconcious influence? Or is it something more? I don’t presume to know. As a writer I find it helpful and as a son I find it humorous. I really enjoy having her spirit guide some of the writing and thoughts. By the by, many years ago I read a book called Conversations With God, and the author did the same thing, style-wise, with what he perceived to be the voice of God.

I’m not God, Son. 

God dammit I know you’re not, God, Mom. But while you’re here snooping around, would it kill you to help your baby son pick up a spare or two in league? I’m fine with big misses... but those fucking razor-thin misses, they hurt mom. They really do. Like those knee bleeds when I was but a boy... a little boy with a knee the size and shape of a grapefruit. Trust me, Mom, no beer-chugging mortal at the Lanes would notice if you just tapped that thing over right as the ball whizzes by... 

Easy peasy, Son, but-

But nothing it’s settled. Thanks in advance, Mom.

BUT...I can’t do that.

You can’t abuse any supernatural powers? Might freak people out? I get it.

That’s not it, Son.

Well then what is it?

You asked your Dad to be your Coach, not your mother...

Oh my God are you being serious with me right now? Oh wait, I get it, you’re just messing around. I love you- oh, and I’m glad you like the new haircut. I didn’t want my hair getting in my eyes when trying to line up my shots.

Oh, I believe Mom uses a Moody Blues song on my Spotify playlist to communicate with me. Recently when I got my usual Andy Warhol-esque discheveled hair cut down shorter than it’s been in a bit, I got in the car and “Your Wildest Dreams” was the first song to play as I left the barber shop. And, get this, I wasn’t even in my then-70-song playlist. Nope, I was listening to some random Top 100 Songs of 198? playlist.

Not only that, the song came up again a couple of weeks later, after I had a massage. I think Mom is happy that I’m focusing on my health in a 360-degree approach. Which is something a younger version of me would never have ever imagined possible... accupuncture... massages... yoga?! One of my last conversations with her, she told me to enjoy my life and do things I love while I can enjoy it. I like to think that she’s happy seeing what I’m up to, even if my hair does look way cooler when it’s spiked out and unruly.

Sure it does, Son.

Ask Andy Warhol about that, Mom.

Nothing to say? That’s what I thought. Love ya, Mom. Thanks as always for checking in.

Actually, I have a blog post coming up about the Andy Warhol diaries documentary on Netflix. That cover photo from the 1997 POZ was taken by Christopher Makos, one of Andy’s closest friends who is featured in the documentary. I remember when Sean Strub told me about my appointment with Makos that Summer day in 1996, and Christopher’s connection to Warhol. Now, I wasn’t an expert on Warhol, but I certainly knew who he was and thought it was cool that my fifteen minutes of fame was going to have a direct line to such a revered artist.

But more on that next time. For now I need to give a shout out to bowling legend Guppy Troup. My family ran a pro-am bowling tournament in Waynesboro and the surrounding area for years and Guppy and his son and current bowling superstar Kyle Troup both bowled in it. Like the AIDS community, the bowling community can be a pretty tight knit group. My thanks to Guppy for texting my dad to pass along his condolences about my mom.

When the world is the smallest, sometimes it feels like it’s at its most beautiful. Since the COVID pandemic, Gwenn and I have gotten way into televised bowling. I really think watching it on TV helped get my gears going for this much needed return to the lanes... speaking of, I need to remember my piston leg technique. And not to rush my steps. To aim beyond my mark... and, most importantly?

To just have some fucking fun.

Positively Yours,

Shawn

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IN CASE YOU MISSED IT ON POZ!

Some recent articles and news stories that I feel are worth a read:

Charlie Settles HIV Lawsuit Against Ex

Watch Princess Diana’s AIDS Advocacy Continue to Inspire

AIDS Memorial Quilt Heads to South to “Change the Pattern”

 Wastewater Surveillance Has Become a Critical Covid Tracking Tool, But Funding is Inconsistent

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